a victory—with pockets

I ordered myself a sewing machine (a Brother CS-6000i) as an early birthday present. It came in the mail a few weeks ago, and I love it. My first project—what else? A tablecloth for my (teensy) sewing table—was a bit of a disaster, with terrifically crooked seams. I did, however, learn some lessons that I applied to my next project: a skirt tutorial found on Pinterest.

It took me all last weekend. I ripped apart many a seam until they were all straight as arrows. Still, it’s not perfect, but I absolutely adore it. It even has pockets, people! (Pockets are crucial in my line of work.) And, better yet, it has an elastic waist but doesn’t look frumpy. Since my hands have been giving me trouble lately, a cute skirt with no buttons or zippers to fumble with is just what the doctor ordered.

Plus, I love that I have a hobby that I can do even when I’m not feeling great. With jewelry making, it my hands are sore and thick, it’s hard to manipulate tiny beads and thin wire. But, I can push a yard of fabric under the needle even with club hands. So, hooray!

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keeping up

via Glamour

So, apparently Kim Kardashian has psoriasis. I’m not so sure I like the tone of this L.A. Times blog post, but at least the writer mentions it is an autoimmune disease (though the off-hand mention of methotrexate as a treatment for it leads me to believe someone didn’t quite do his homework, despite the mention of the National Psoriasis Foundation’s website). But, I digress.

I was lurking on some of my psoriasis boards, and I came across something interesting—and it was the same on pretty much every forum I visited: People universally wanted Kardashian to step up and use her notoriety to gain some recognition and awareness for the disease (as if showing the entire world [that watches “Keeping Up With the Kardashians,” at least] the moment of her diagnosis wasn’t enough). I was pretty surprised at my reaction.

I completely disagreed with them.

I know, right? Isn’t that exactly what I’m trying to do with my little blog? Sure, it is. And it would be awesome if she decided to become a spokeswoman for the NPF. I would be right behind her. But I’ve had psoriasis for more than a decade, and it took most of that time for me to accept it, to be willing to talk about it with others. How can I expect someone else—regardless of where she falls on the obscurity-fame continuum—to be I bigger person than me? To be braver than me? Hell, I still blog under a pseudonym, and she let perfect strangers into her doctor’s office with her, let them watch her reaction to finding out she has a lifelong autoimmune disease.

Honestly, I think even if she didn’t lift a finger to raise any more awareness about psoriasis, I’d say she’s done quite a bit. After all, we’re all talking about it, right? And so are quite a few people. Searching Google for “Kim Kardashian psoriasis” brings up about 554,000 results. Yowza. So, right on, Kim.

i’m loving … syd rocks

I was reading through my blogroll the day and stumbled across an awesome site: Syd Rocks. Sydney makes necklaces out of beach rocks on the shores of Lake Michigan. Why? Here’s a bit about her, taken from her website:

Sydney started her rock necklace business when she was only 8 years old. She found beautiful rocks on the beach of Lake Michigan and turned them into necklaces with a simple string. The necklaces were a hit among family and friends. She saved up the money she earned and planned to use the money for something important. Now she knows what that is…
In Sept. 2007 at 10 years old, after a lesion was discovered in her cheekbone, Sydney was diagnosed with LCH, Langerhan’s Cell Histiocytosis, a rare blood disorder. The cause of the disease is unknown and it is estimated that Histiocytosis affects one in 200,000 children each year in the U.S.
LCH is considered an “orphan” disease, meaning there is no government funding allocated  to research the best treatments and ultimately a cure. After a biopsy  confirmed Sydney’s LCH diagnosis,  Sydney underwent surgery to have a  port implanted in her chest to receive six months of chemotherapy along with high doses of steroids. Although
Histiocytosis is not classified as Cancer, it requires some of the same treatments.
Sydney has been doing well since she stopped treatment and plans to continue making and selling her rock
necklaces until a cure is found for LCH.
100% of the money earned from her Syd Rocks for LCH necklaces will be donated for medical research to find a cure for LCH and $10 from each t shirt sale will be donated to the Giving Rocks Foundation established to help other charities and projects Sydney has come to know and love.

Spoonies have to stick together, and I love that she’s been able to raise awareness about LCH in a tangible way. I know what I’ll be adding to my birthday list.

already pretty: body gratitude in the face of illness

I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.

Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).

But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.

Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.

But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.

#HAWMC day 28: not anymore

(I won’t lie—I really wanted to name this post “At Least I’m Not As Sad (As I Used To Be)” but I already did that. Damnit.)

(Also, incidentally, last poem of the Heath Activist Writer’s Month Challenge!)

Not anymore

I used to be carefree. But I’m
not anymore. I
used to be weak. But I’m not
anymore. I used to be aloof.
But I’m not anymore. I used
to be afraid of losing. But
I’m not anymore. I used to be
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(Now, I’ll leave you with fun.’s “At Least I’m Not As Sad (As I Used To Be)”. Because that song is awesome.)

#HAWMC day 18: right on schedule

As a journalist and editor, I don’t really have a typical day; I might copy edit or write one day, paginate and proof the next, and go out in the field and do interviews the next. But, I guess I could write down what my schedule looks like for this week.

Monday
7:04 a.m.: Alarm goes off. I hit the snooze button in nine-minute intervals until about 7:30.
7:31 a.m.: Shower time. It’s slow going, and I have a lot to do: hot oil treatment, shampoo, exfoliate my face, cleanse my face, condition, exfoliate the rest of me, shave.
8:03 a.m.: Breakfast time. Today I had a bowl of corn Chex, a banana and a mug of Lady Grey tea with honey. I surf the Web until about 8:30.
8:29 a.m.: Time to get pretty. I blow-dry and flat-iron my hair, brush my teeth, moisturize my face and body, put my make-up on.
9:05 a.m.: Time to get dressed. I had the worst time deciding what to wear this morning. Since I had a meeting tonight, I had to look extra professional. I eventually decided to go with wide-legged trousers, nude shell and a belted cardigan. (In case you cared.)
10:15 a.m.: First meeting of the day. I’m on my feet for way longer than expected—until about 10:45. It was a relief to get into my car and drive to my next appointment.
11:05 a.m.: Second meeting of the day. More sitting. Much better.
11:37 a.m.: Back at the office. I start going through the 300-plus emails I got over the weekend. Sigh.
12:04 p.m.: Lunchtime. I have some baked ziti with spinach the Professor made last week. I type up what came out of my first two meetings while I eat.
1 p.m.: Coffee break! My reporter and I walk down to the coffee shop, where we get entrenched in a 20-minute conversation about pie. (Seriously. It was awesome.)
1:22 p.m.: We head down to the local cafe to get a delicious cookie.
1:38 p.m.: Back at the office. I start fixing 20 photos from my Sunday event in CMYK and greyscale for the paper, since I don’t know how much colour will have at this point.
2:45 p.m.: Finally done with pictures. I start on stuff for our market-coverage freebie that gets sent to all the homes in our area.
3 p.m.: Get done with everything I can do until the reporter gets back from her meeting and gets me a story. I start putting the community calendar together, culling past events and adding new ones.
3:45 p.m.: Reporter gets me the story. I tell her it needs a graphic element, so she gets me the info I need for it. I futz around until I get a graphic I think I like. I put the four-page extra together.
4:45 p.m.: After printing out the proofs, I realise I hate the graphic. It’s too big. I make it smaller.
5:30 p.m.: Extra proofed, PDF’d and sent. I make my dinner—a peanut butter sandwich. Yum.
5:34 p.m.: I decide to work on the photo page for the weekly paper using those 20 photos I Photoshopped earlier. I use six of them.
6:42 p.m.: I head over to my school board meeting. There’s no parking, so I park in a nearby church and walk.
7:01 p.m.: The meeting starts. Throughout, I take notes on my laptop and write 1.5 stories for the weekly.
9:03 p.m.: Meeting’s out. Now, I drive 30 minutes home.
9:32 p.m.: Home. The Professor and I watch two episodes of “That 70s Show.”
10:24 p.m.: The Professor and I take the dog for a walk.
11 p.m.: We’re home. He settles down to play a video game, and I finish up some work.
12 a.m.: Bed time.

Tuesday
6 a.m.: Wake up. Wash face, brush teeth, make up, dress.
7 a.m.: Out the door. Drive 30 minutes to first appointment.
7:35 a.m.: Interview with student and her mom.
8 a.m.: In the office. Finish writing the story with the student/mom interview and write up the meeting from last night.
9 a.m.: Print out three stories that haven’t been proofed to copy edit. Reporter arrives.
9:15 a.m.: Proof reporter’s stories.
9:30 a.m. to 6 p.m.: Paginate newspaper.
6 to 7 p.m.: Proof pages.
7 to 7:30 p.m.: PDF pages, proof them one more time and send them to the press.
8 p.m.: Home.
8:04 p.m.: Walk the dog with the Professor.
9:12 p.m.: Home again. Watch a bit of TV or read a bit before getting ready for bed.
10 p.m.: Bed.

Wednesday
7:17 a.m.: Wake up. Shower. Blow dry and flat iron hair. Eat breakfast. Brush teeth. Make up. Get dressed.
8:30 a.m.: Off to work.
9 a.m.: At work. Check emails that I ignored Monday and Tuesday.
9:30 a.m.: Put up the eEdition of the paper.
9:47 a.m.: Put up the website and get later updates ready to go.
10:14 a.m.: Sigh of relief that busiest part of week is over.
10:15 a.m.: Talk with reporter about what we’ve got going on for the week. Assign stories as needed.
10:40 a.m.: Look at what other newspapers had. Curse if we’ve been scooped. Laugh maniacally if we scooped them.
11:40 a.m.: Go over the other newspapers in the company with reporter. Point out good and bad design. Eat lunch while doing it.
noon to 1 p.m.: Cover the office while office manager is out. Help customers. Take ads. Etc.
1 p.m.: Lay out monthly publication.
4 p.m.: Proof, PDF, send to press.
5 p.m.: Quitting time!
Then, I’m meeting a friend for (vegetarian) sushi! Yum.

Thursday
This Thursday, I’m taking the morning off because of how much I worked Monday and Tuesday. In the afternoon, I’ll write and I’ve got an event to cover.

Friday
It’s Good Friday! I’ll go to church, and then we’re heading to my parents’ house.

There’s not a lot of time in there for self-care, but on days I feel bad, I try to make time for myself. On the weekends, I usually take it easy, though I do cover weekend events, too. It’s a busy life I chose, and it’s often not compatible with taking good care of myself. But I love it, and that keeps me going.

chronically a babe

Before I got diagnosed with psoriatic arthritis, I had a vision of what a chronically ill person looked like, though I’m not really sure where it came from. Think dingy grey robe, sad pink fuzzy slippers and terrible, slumping posture. Of course, I know now that’s not (necessarily) what chronic illness looks like, but I still think that image of perpetual illness persists for a lot of people. Maybe that’s why it’s so important to me (and I’m not alone, clearly) to keep the babe in chronic.

Even the BBC’s Newshour took a stab at this via New Year’s Resolutions (chapter 9 is where it starts), the idea that the outside really matters.

[You might say,] ‘Oh, I don’t know if I’ve got the energy or the self-belief to really make that leap.’ That’s where I think making a few personal changes, like to the way you look, perhaps, can really kind of just give you a little bit of that instant boost and give you that extra energy you need to tackle the bigger issues head-on. If you can start there, then I think it’s much easier to make those fundamental changes going forward.

And I really think that’s true. I know a month or so ago, when I was in the grips of that awful flare, it was really hard to care about how I looked; it was hard to make that extra effort—to use those extra spoons—to put on some lipstick, do more than just comb my hair and really think about the clothes I was going to put on my body. But on those days I didn’t do all those things, I actually felt worse.

And that makes sense; looking at myself with flat, limp hair and no make-up just reminded me of how crappy I’d been feeling. (Not that I needed a reminder!) So now that I’m feeling relatively good, I’m working to get down my favourite products, tips and tricks to being not just a Chronic Babe but a babe, regardless of health status. And, in the tradition of the fashion blogger, here are a few of my must-haves to get me on my way to babe-dom.

hair.

  1. Giovanni Tea Tree Triple Treat Shampoo and Conditioner. This shampoo and conditioner duo are great (and cruelty free; they don’t test on animals and don’t use animal by-products in their shampoos and conditioners). My hair feels silky, clean and light after I use them, and the rosemary, tea tree oil and eucalyptus help take the itch out of my psoriasis and cut down on the flaking.
  2. The Body Shop Rainforest Moisture Shampoo and Conditioner. Since my hair gets used to products pretty quickly, I alternate brands so I can use them longer. This shampoo and conditioner (again, cruelty free) make my hair soft and manageable but not greasy, unlike some moisturizing products can do sometimes.
  3. V05 Hot Oil.  Love this stuff. I used it all the time as a teenager, but fell out of the habit when I moved back to Canada for university. Now that I’ve rediscovered it, I used it once a week to help protect my hair from styling damage done by blow-drying and flat-ironing my hair.
  4. John Frieda Luminous Color Glaze.  I use the clear glaze once per week and it makes my hair super shiny, like I spent a ton of money on it.
  5. The Body Shop Macadamia Straightening Balm. This is a must-have part of my cold weather hair routine. In the summer, I often wear my hair wavy, since that’s wash and wear, but in the winter, I don’t want to leave home with wet hair. This stuff lets me have straight hair with volume. And it smells delicious.
  6. Kusco-Murphy Bedroom Hair. I use this as a finishing balm after I’m done straightening my hair (or for hold and frizz control when I leave it wavy).

body.

  1. The Body Shop Body Butter. Right now, I’m using up the rest of my (discontinued, sigh) Black Velvet Apricot. Once I’m done, I’ll be heading back to Moringa. Just a little bit of this body butter and I’m good and moisturized for a day or two.
  2. Aveeno Positively Nourishing Smoothing Body Wash. While I love this stuff, I’m going to have to stop using it for one reason: It’s hard to get the body wash out of the body and into my hand. I have to squeeze unreasonable hard to get any to come out, and that’s just too hard on my hands.

face.

  1. Aveeno Positively Radiant everything. I use the daily scrub and the cleanser in the morning before slathering on the facial mositurizer with SPF 30 (a must for someone with fair skin who also happens to be on MTX). At night, I use the makeup removing cleanser, which does a good job of getting even the most stubborn eye makeup off my face.
  2. Neutrogena Healthy Skin Blends Sheer Highlighting Blush. It’s soft, fresh and it stay put. ‘Nuff said.
  3. Maybelline Eye Studio Lasting Drama Gel Eyeliner in Plum. I love this stuff, and I normally hate applying liquid/gel/pencil eyeliner. It’s easy to get a nice thin or thick line that looks straight and stays on all dang day.
  4. The Body Shop Eye Shadow Palette. This one has a couple shimmery purples and corresponding highlights that I just love. It’s easy to apply and stays on all day. And—a bonus—it doesn’t burn the way some commercial eye shadows do (or maybe that’s just me).
  5. The Body Shop Colourglide Lipstick. A lipstick that’s actually good for your lips. Sign me up.

Now, of course, I’m still a babe whether I’m all decked out or at home in my sweats, but it certainly doesn’t hurt to look good. And really, it boils down to this: When I look good, I feel good. That’s the most important thing.

fake it until you make it

I know for this ChronicBabe blog carnival we’re supposed to write about our tips and techniques for taking care of ourselves. I could write about hot water bottles or bags of frozen peas, drugs that help or meditation techniques that make me feel better. But I’m not going to do that.

For me, the most important part of taking care of myself goes beyond flares and remission, beyond migraines and PSA. For me, the most important thing is simply this: What can I do to make myself feel more like the me of old, the healthy me, the me that didn’t worry about self-care tips and tools?

And that’s a mite trickier. (At least, for me it is.)

I don’t know about anyone else, and I’m certainly not trying to be a mouthpiece for all patients — or even all of us out there with PSA — but I struggle to find a balance between the me-that-was and the woman that’s here now. I’m not even sure if striving to stay true to that girl is healthy or even feasible, but at this point in my life, it’s something I need to at least try to do.

So. How do I do it?

The makeup I have on me at work.

First things first. I am all about makeup tricks that make me look like I’ve got a healthy glow, instead of a pale, bags-under-eyes whatever the opposite of glow is. Un-glow, maybe. For that, my friends, I need makeup and skin products. Not a ton, mind you, but some are certainly needed to mask lack of sleep or a face taunt with pain. But before you can put makeup on, you must start with a clean face. In the morning, that means two Aveeno products: the Positively Radiant morning scrub and the Positively Radiant moisturizer with SPF 30 in it. I don’t compromise on the SPF. It helps my face look brighter because it’s got some kind of light-reflecting pearls in it. I don’t know really how it works, but it does, so I don’t ask questions. On days when I’ve got puffy bags under my eyes, I’m a fan of the Aveeno Positively Radiant. But, when my dark circles are so bad that they’ve got to be concealed, I use MAC’s Fast Response Eye Cream, which is a great base for under-eye makeup, but not so much for de-puffing the eye area. To conceal, I’m a big fan of the Physician’s Formula concealers, for under the eye and for the odd pimple I get.

So. Not looking tired anymore? Check.

Now, for the rest, I love to use the makeup I used before I got sick. I’m a fan of MAC, L’Oreal HIP and some Revlon eye makeup. You’ve got to use what works for you. But, to look really awake, I curl my lashes and apply one coat of mascara. I already have long lashes, so I use a volumizing formula, like L’Oreal’s Volume Naturale, or Cover Girl’s Eye Lights in Ruby Negro (since I have green eyes).

I don’t use foundation because my skin’s pretty good. When I did, I liked Neutrogena’s tinted moisturizer; it looks like your skin, but better. I’m also a huge fan of Neutrogena’s Healthy Skin Blends for blush or NARS blush in Orgasm, which looks good on pretty much everyone. For lips, I go back and forth between a few different lipsticks. I use Jemma Kid’s nude lipstick, but it’s a bit drying, so I put on some Rosebud Salve underneath. I have a MAC cream lipstick in a red/magenta colour to use when I want some drama. I also love Maybelline’s Color Sensational Lipcolor (I have three!). It’s really hydrating, so I don’t need to worry about lip balm underneath.

Now, for hair. On bad days, days when I’m not up to blow drying or running a flat iron through my hair, I use John Frieda’s curl collection and air dry my hair. Once it’s dry, I just put a bit of anti-frizz cream on it and I’m good to go. And I don’t know about the rest of you PSA ladies, but my skin is super dry. I love Nivea’s body lotions; they are amazing and keep my skin super soft.

And that’s it. It just takes 20 or so products to keep me looking like I did before I got sick. But, when I look better, I feel better, so that’s really important to me. What tips and tricks do you all use to keep the world from knowing just how bad you’re feeling?